Ehlers Danlos Syndrome Pills

After my last pain clinic doctor’s visit, I wasn’t satisfied
with the medicine recommendation. As I mentioned in my last post, the
doctor wanted to reduce a medicine that really helps me. The awful dizzy
spells that have recently been making me miserable, are what I asked this
doctor about. He seemed to not really listen to me. Since I see an
intern for the visit and then the prescribing doctor for only about one minute,
it’s not always easy to get your point across!

So,
I’ve been doing my own investigation to see which medicine may be causing
the dizzy spells. I’ve thought long and hard about which medicines were
added the most recently, because the dizzy spells have just recently started.
The doctor wanted to lay off a drug that I’ve been on for 4 years.

That didn’t make any sense to me. The last medicine he added to my
mix was Extra Strength Tylenol (4 doses per day). When I skipped a day
the dizzy spells were lessened to only 1. The next day I started the Tylenol
again and the dizzy spells were back with 3 spells before noon. The
following day, no Tylenol….no dizzy spells. I think I may have found my
problem pill.

I’ll
continue not taking the Tylenol and see if the spells stay away. When you
have Ehlers Danlos, Orthostatic Hypotension, Mast Cell Disorder, autoimmune,
etc…you have to advocate for yourself. I am always reading articles,
research studies, forums, and anything I can find to help myself. Many
times I can find nothing about the problem. Ehlers Danlos Syndrome hasn’t
been studied much. Also, many of my disorders call for drugs that may
conflict.

This
is my journey that continues along a crooked path. As I read the journeys
of others with chronic illness, I know that they have similar journeys.
As our journeys progress we do the best we can and try to enjoy the life
we have. I love living. My back may be throbbing, but I love the
feeling of breathing. My head may hurt, but I love to be alive.

James 1:17 –
Every good gift and every perfect gift is from above, and cometh down from the
Father of lights, with whom is no variableness, neither shadow of turning.